Well Halleluiah!
52 ...and a research focus on men
This is strange, because later on the report complains that studies are mostly female patients:
88 Clinical studies have focused on predominantly Caucasian, middle-aged women.
92 Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a psychological disease in etiology.
Note the careful use of the word "etiology". This fits in with Sir Weasel's theory of a biological etiology that is continued by the insistence of the patient to think the wrong thoughts. This is left unspoken in the above quote.
99 Future studies should distinguish between ME/CFS alone, ME/CFS with comorbidities, and other 100 diseases
What about distinguishing between ME and CFS! So far, this document completely ignores this issue and the entire history of the naming debacle. We don't know if the authors think "ME/CFS" is one illness with a funny compound name, two illnesses somehow jammed together, or something else. Really, we have no idea what exact illness this report is even talking about!
105 A clear case definition with validated diagnostic tools is required before studies can be conducted.
Is this a statement of the obvious or an excuse not to fund any more research?
113 Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy [GET]) demonstrate measurable improvement, but this has not translated to improvements in quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a component of multimodal therapy.
Looks like they're trying to thread the needle here. They didn't study the PACE garbage very close, or have chosen to ignore its obvious flaws. It's hard to understand how any sincere person could think that the claimed study improvements should trump actual real-world experiences that contradict study results, especially after admitting that contradiction.
135 In many cases, lack of instructions or guidance for including graded exercise therapy often causes additional suffering, creating fear of harm from a comprehensive self-management program that may include some physical activity
So GET creates a "fear of harm" but no actual harm? This is really, really bad. It implies that GET would work if only it were properly implemented.
159 Patient- centered tools that use simple statements need to be developed to ensure that the patients understand the questions.
I fail to see how better subjective questionnaires will move the science forward, although maybe they can sort-of help clinicians make a diagnosis? But if a clinician needs to use a questionnaire to make a diagnosis, are they really qualified to diagnosis this illness?
191 The dissemination of diagnostic and therapeutic recommendations should focus on primary care providers.
Nope. Nada. NO. GPs have no business managing this illness on their own. No one would expect a GP to manage any other severe, complicated multi-systemic disease. Patients will never receive proper diagnosis and treatment until there are competent specialists accessible to everyone with this illness.
198 Findings in the literature are inconsistent, and there are many gaps (e.g., Is ME/CFS one disease?).
Well, how did this little tidbit get slipped in past the psychobabblers? But still, how about, "Is ME CFS?"
At Line 200 the report moves into recommendations. They are so obvious, I hope they didn't have to strain to hard to come up with them.
213 Create new knowledge. Investing in bench-to-bedside to policy research for ME/CFS is recommended
Huh. "Create new knowledge" and do some research. Why didn't I think of that. Looks like whoever paid for their fancy degrees got their money's worth.
244 Researchers should be encouraged to develop a repository for qualitative and quantitative work. Similar to cancer registries, there is much to learn by developing a registry/repository of all patients with ME/CFS
This has already been rejected by HHS. The report writers probably don't know that.
282 Studies addressing biopsychosocial parameters (including the mind-body connection), function, and QOL should be encouraged.
A grab-bag of recommendations naturally has to include something for everyone, especially the psychobabblers.
313 We believe ME/CFS is a distinct disease that requires a multidisciplinary care team (e.g., physicians, nurses, case managers, social workers, psychologists) to optimize care.
But no neurologists/endocrinologists/immunologists to treat patients with a neuro/endo/immuno illness? REALLY?
362 The modest benefit from CBT should be studied as adjunct to other modalities of treatment such as self-management..
Never miss a chance to promote psychobabble!
365 We recommend that the NIH and the FDA convene a meeting on the state of ME/CFS treatment.
Yup. Let's have a meeting to discuss if we should have more meetings
379 Thus, for needed progress to occur we recommend (1) that the Oxford definition be retired, (2) that the ME/CFS community agree on a single case definition (even if it is not perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful recovery..
Finally, something specific, helpful, and doable. Thank you. The "community" (excepting psycobabblers, of course) already seems to agree on the CCC. Too bad the report doesn't mention that and recommend the CCC for adoption. But I don't imagine that would be allowed.
384 We believe there is a specific role for multimodal therapy.
Anybody know what this is? Smells like CBT and GET to me.
Well that's it. No footnotes. No references. No data. The Evidence Review was not included by reference. I guess that's what makes it "Executive" material!
p.s., the line numbers are part of the original document.